Having a baby is the happiest moment in a parent's life. At first, you look forward to the appearance of a little angel, and then there is a great overwhelming desire to hug him. And it is very painful when you cannot do it because your arms can cause unbearable pain because your baby is not like everyone, but special because he was born with a rare genetic disease – bullous epidermolysis. The slightest pressure on the skin causes damage to the skin. Unfortunately, this is the diagnosis diagnosed by little Vladyslava.
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Vasia is 12 years old. He has been diagnosed with cerebral palsy almost from birth. But success in the fight against the disease was not achieved as much as we wanted. Vasya has a large family beside him, with three more parents. They live very modestly in a small village in the Ivano-Frankivsk region, but despite this, the family tried to do everything to improve Vasia.
Ania has been living with bullous epidermolysis for 16 years. Can people get used to this disease? Perhaps the desire to be healthy is as strong as the desire to be happy. Only this is not always attainable. The bully epidermis is a rare incurable disease with about 200 people living in the whole of Ukraine. Living with this illness is unusually difficult: the human skin is so tender and thin that any contact with something – causes its severe damage. Children who are sick with bullous epidermolysis are usually covered with wounds, so they need to be worn with special materials that do no harm, as well as smear a huge amount of skincare products.
Little Hlib was born on April 29, 2009. He was born prematurely and immediately in a difficult condition got into a resuscitation department in Kherson. After prolonged treatment, the child showed hearing problems, was diagnosed with "Bilateral neurosensory hearing loss, deafness of 4 degrees". Mum and relatives of Glebchik did not expect such a diagnosis, because nobody in the family ever had such problems. This diagnosis collapsed from heaven to head, but it does not look like a blessing ... The family was in a situation in which they did not know how to act at all. How to bring up a child who does not him? How to talk to him? How to teach him to speak? Is not it necessary to do it at all?
Eleven years ago, in the Kravchenko family, their first daughter, Sophia, was born. Young parents were very happy, but not for long. The diagnosis – congenital scoliosis they heard from doctors already in the first month of the life of their daughter. Confusion, fear and despair have become constant companions of young parents. It turned out that for such a diagnosis and such a small child there is no cure, only preventive measures. Sofia's parents carried out all the recommendations of the doctors: massages, swimming pool, breast-gymnastics, but scoliosis only continued to progress. Doctors waved their hands: "A rare case, we will observe." But observation does not heal!
3 years ago a little boy Tymofii was born. Before birth, there was no suspicion, the baby developed normally. But the birthday of little Timothy turned out to be fatal. The births were very difficult, the child had asphyxia, and as a result, the boy's brain was very badly damaged. His diagnosis: cerebral palsy (level V on HFCS). In addition, Tima has epilepsy and he takes special medications.
Makarchik is a child whom parents happily expected! Pregnancy went well, without complications and threats. Childbirth began on time and nothing foreshadowed trouble. Unfortunately, childbirth were very difficult for both mom and son. Makar, when he was born, did not cry, did not move or breathe, was in a state of severe asphyxiation, which led to swelling of the brain. At first, for two weeks, Makar was in intensive care, in a serious condition, connected to numerical droppers and a ventilator, fed him through a probe.
Vlada was born in the evening in an ordinary district hospital by cesarean section. Childbirth was heavy. After the first examination, the doctors did not notice anything, except for the unevenness of the legs. Somewhere in an hour, during the second inspection, small wounds were noticed at the place where the hands touched the child’s feet. And after a blood test from a finger, a skin is gone. Then it became clear that something was wrong with the child’s skin. Immediately called an ambulance from the area and the child was taken to the pathology. By the morning, he was diagnosed with Buliozny epidermolysis.
Little Bogdan is 8 months old. From birth, the baby suffers from severe pain from the wounds that form on his body. The boy has bullous epidermolysis, he is a butterfly child. His skin is too thin and vulnerable to sustain the onslaught of the environment.
12-year-old boy Denys, from the Dolyna city, Ivano-Frankivsk region, was born prematurely in the 8th month. The condition of the baby at birth was very difficult. Several hours doctors from reanimation fought for boy's life. When they succeeded in saving a child, they were transferred to a room of prematurely born children. Subsequently, Denys was diagnosed with left-fetched congenital hip dislocation, later discovered and right-sided. In 10 months, the child was thighs and the plaster was applied for six months. But the diagnosis of the neurologist remained inconsolable - the child had cerebral palsy.